Elasti-Girl

Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Sunday, December 30, 2012

Upon starting this blog, it was important to me to have a form of anonymity; not a lot, just enough to help me to feel free enough to release these inside thoughts of mine and not be concerned with burdening anyone in my "in-person" life with the heaviness of what EDS puts me through. I'm not sure why I've felt that way, but perhaps it was one of the stages of being able to relate to myself as chronically ill. I am afraid of others seeing me as ill because I am terrified of seeing myself as ill. Now, I can't get away from it, I am ill, but it's not as scary or even as bad as I thought. I can still find love and peace and fun and blessing, so I'm carrying on. This blog isn't completely anonymous; my name is in fact a form of Kris, and I have a lot of friends who call me Kris. I do not live in the exact city listed, but I live close enough to wish that I lived there :). My pictures are all real and truly me. The only real anonymity is that none of my in-person friends or family can find my blog by searching for me, nor are they aware that I even have a blog. Well, they didn't know until recently. It's important to note, or remind you, that I am not from this part of the world, so most of those that I love are on Facebook, and that is the medium we keep in touch. Though people locally can probably see that I am sick, most are polite enough not to ask.
It all started in late November, when I was getting exponentially sicker by the day. I was losing weight rapidly and just really going down hill, yet I was determined to get to A-10's Make A Wish trip despite my Dr. telling she did not want me to go. My dear friend- a sister of my heart- Jessica chastised me for not letting people in my life know what I have been going through. How they could be praying for me, or helping my family in some way if they only knew. I got very uncomfortable for two reasons; 1; what I described above and 2; because I realized it was only my pride that kept me from doing this, which is pathetic, and that I am keeping myself from growing as a person. So I wrote the following note on Facebook:

My Jessica is mean

by Kris on Tuesday, November 27, 2012 at 7:27pm ·

So
I have this Jessica, and she is one of my most dear friends. In fact,
she is MY Jessica and she loves me a whole lot, and while you'd think
the opposite, this love she has for me makes her mean. Why is she
mean??? Well, I'm glad you asked; she is mean because she's making me
write a post on Facebook to tell you, my other loved people, that I am
sick and need for those who pray to please do so. She's so mean!I don't want to tell you that I'm sick! I want to tell you how much I
love living in Virginia in the Fall with it's bright red & orange
leaves all over the trees and yards. I love how if you drive down a
small street at just the right time, you get to drive through a cool
leaf swirly (that's only happened to me once, but it was SO COOL!). I
want to tell you how proud I am of my M-girl for making the Vice
Principal's list, which is no easy feat while being in the GATE program
in the 7th grade. I want to tell you how happy and beautifully A-girl is
growing and how proud I am of how much of a warrior she is over her own
health, educational and social struggles. I want to tell you how
blessed I am that my 8 year old Man-Cub still calls me his beautiful
Mama, and loves to snuggle with me and still has the sweetest little
voice you ever did hear. I want to tell you how excited I am that I get
to have that just-like-heaven feeling of watching my kids smile with
delighted eyes for 7 days straight during A's Make-A-Wish trip
starting this Saturday!We all have stuff; life is hard. Mine certainly is not the hardest; I
consider myself one of the luckiest people alive. It's because of
that, that I haven't put a wholoe lot out on Facebook about being sick,
because being sick hasn't taken away any of my blessings, and let's face
it- it's way more fun to think on and talk about our blessings than it
is to talk about illness. However, I am here, obeying My Jessica and
telling you that I could use some prayer & good thoughts (because
she's mean). Alot of you know that I have degenerative connective
tissue disorder called Ehlers Danlos Syndrome (EDS) Types III & IV
(also calleld Classical & Vascular types- you can learn more at www.ednf.org)
which causes the body to have a lot of different problems since a lot
of our body is made up of connective tissue- including our GI tract;
thus my need for prayer. I have been having trouble with food
sensitivities for the last few years and have not been able to tolerate
any solid food at all for nearly a month. After more testing, I was
diagnosed on Monday with gastroparesis- where the stomach is essentially
paralyzed and it's probable that the same issue is in my intestines.
Try as I might I am at a point where I am barely able to get any
calories or other nutrition into my body and my size 2 jeans are falling
off my 5'8" frame. I would really like to get better; my life is
revolving around feeling like I'm about to be sick, or pass out, or fall
over, or burst wide open. I would LIKE to just be better quietly,
without any attention being put on me over it. I would LIKE to just
quietly rejoice in eating sushi and sleeping all night without waking up
from pain or sickness. MY JESSICA, however reminded me that God didn't
make us that way. We were made to be-friend each other, and love each
other, and pray for each other. Frick'n Jessica.So here I go: please pray for me. Please pray that I will get better,
and that I will be able to enjoy Anika's Make-A-Wish trip without any
trips to the hospital (for any of us!), that I will be able to get
nutrition and feel good enough to enjoy these wonderful memories that we
are about to make. Please also pray that my Dr.here will be able to
get me in to see Dr. Levy, an EDS specialist at Johns Hopkins soon
enough. Please pray that my family will be proud of how I am trying to
be brave and strong, when I don't feel strong and I don't always feel
brave. Lastly, pray for blessings on My Jessica, because I love her way
a lot, even when she's mean.

I could not have anticipated the responses I received from this note; so many people who I know and love, but live across the country (where I am from) had no idea. 39 comments by people who love me, want health and good things for me, and even thanked me for sharing. Now since I've been in the hospital, they all want to know what's what. So, I am taking the leap from anonymity into sharing my life. This scares me, but at the same time this falls right in line with living my life wide open the way I want to. So I'm going to do it.

In order to do it; I've decided I needed to change somethings about the way I blog. One small change ncludes a slight tweak to the name in order to not confuse things with a certain Disney Movie. Most other changes are just to keep myself accountable to what & who I want to be. I want to blog positively about my life, not just my illness- but as it touches every aspect of my life, it will be there. I want to inform, but most importantly I want to stay true to my goal of showing others that living with a condition like this; losing abilities, getting sicker and sicker, does not mean that life is nothing but gloom and doom. Life has much to offer despite unsavory circumstances; I feel that in many ways we wouldn't even have the opportunity to know that if we didn't experience those circumstances in the first place. I AM one of the luckiest people I know!

When the new blog is ready to go live, I will post the address and personally invite those who have commented on this blog to go to the new one. I truly hope you will follow me. Please comment on this post if you'd like to make sure you get invited.

Thursday, December 20, 2012

Thank you.
Thank you nurse K for the medication. Thank you Mi-mi for cleaning the room while I was gone for that procedure. Thank you for the new IV. Thank you for the 3am blood draw. Thank you for helping me clean myself up. Thank you for not laughing at me when I cried that I just wanted to go home. Thank you for all of your help today, I hope you have a good evening. Thank you for all of your help last night, rest well today. Thank you for your visit. Thank you for your kind card. Thank you.

There is something so very personal and humbling and exposed about being in the hospital. I don't get to do anything by myself, and I feel compelled to thank everyone around me for doing their job. I hate it. I could probably have a better attitude about it, but the fact is that I like doing things for myself. I do not like being this vulnerable, though I'm still very thankful.

I'm still in patient, but I'm springing out for Christmas. From there I will be monitored closely to see if I'm progressing on the outside with the threat of being re-admitted ever looming. I have worked very hard with the help of an NJ tube to get nourished while in here, and I will have to work 3x's as hard outside. I...can't...wait....to....get.....home!

Thursday, December 13, 2012

Make-A-Wish made my entire family's dreams come true. I made it through the trip, but only barely. We got home late Friday night, but Tuesday afternoon, I was admitted to the hospital where I've been ever since. Not sure how long I'll be here, but I'll update more thoroughly when I'm feeling better- I haven't been able to return texts, emails or other messages because I just don't have the energy, can't stop puking, feel so awful....on that note....gotta go.

What is Ehlers-Danlos Syndrome (EDS)?

•Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders affecting about 1 in 5,000 – 10,000 (though I've heard up to 1 in 25,000 depending on the study). It is caused by faulty collagens. Collagens provide structure and strength to connective tissue throughout the body. Collagen is mostly found in skin, blood vessels, and internal organs; vascular structures (the walls of your veins & arteries), hallow organ structures (GI Tract, female reproductive organs, etc.) ligaments.

•There are six major types of Ehlers-Danlos Syndrome. The different types of EDS are classified according to their manifestations of signs and symptoms.

•Many EDS patients have so many signs and symptoms, it makes it hard for a doctor to diagnose this disorder; it effects many people in different ways so I can only explain my experiences with how EDS effects me.•There is no cure and no treatments to cure Ehlers-Danlos Syndrome, only treatments to try and alleviate symptoms.